NEW_LIVES

NEW_LIVES is an interdisciplinary research group, funded by Germany's Federal Ministry of Education and Research, that unites researches from the fields of medical ethics, law, medical psychology, human genetics, and pediatrics at the Universities of Heidelberg and Mannheim. Its overarching task is the development of normative guidelines for the implementation of a genomic newborn screening program in Germany, with a focus on issues such as defining selection criteria for target diseases, determining the requirements of family genetic counseling and informed consent, and assessing the ethical-legal framework for the secondary use of patient data in research and related data protection needs. As part of this work, we are undertaking a clinical implementation study aimed at defining and testing a scalable workflow for a future screening program.